Advice please

My recent blood results were TSH 4.29 & FT4 16.1 I am taking 50mcg levothyroxine and have been for 2 years. Following some research I believe I'm a case for T4 + T3 but my GP never agrees to refer me to the Endo who is the only person who can prescribe T3 as my GP surgery doesn't. So...back in March I did a 6 week test period taking 50mcg T3 (which I bought online) plus my usual 50mcg T4 and compared blood results...the test period results were TSH 0.44 & T4 12.7 & generally I did believe that I felt better. Following the latest blood results (the first ones I mentioned) my TSH levels are 0.09 over the guideline of 4.2 so my GP wasn't going to make any change to my medicine. I rang the GP & explained about the test period I ran myself & also some significant lifestyle changes I have made in the past 12 months & she agreed to refer me to the Endo. The Endo has written back to my GP to say there is no need to refer simply put my T4 meds up to 75mcg. I should add that my main symptoms are exhaustion, weight gain, loss of hair, loss of eyebrow hair & my toenails crumble away. Does anyone have any advice? Should I push to see the Endo or should I do another test period on T3 (buying it)?

9 Replies

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  • You have to weigh up that your going to be on this medication for life, so buying it out of your own pocket will be costly. I would ask your Doctor to try you on T3 + T4 to see if there is some improvement. If he refuses or tries to refer you yet again. . . change Doctors.

  • I would be inclined to suggest you switch to NDT since clearly your GP is clueless and your local endo is little better ...have

    Ferritin

    Folate

    B12

    Vit d3

    Been checked

  • No they have never been?

  • How would you know your need for T3 without testing ? Maybe you just needed regular increases of T4 as remaing on 50mcg for 2 years is the possible cause of your symptoms.

    B12 - Folate ' Ferritin - VitD - do you know your levels ? Do you have Hashimotos ?

  • No I don't know these levels. My doctor has never mentioned them. Is it common to need your T4 increased regularly? The doctor won't test T3 only the Endo but she won't refer me. I was guessing about my T3 levels following some research.

  • Sadly docs will not mention about the levels for B12 etc - they do not learn the benefits of good nutrition at Med School. It is something you will learn from this forum and how thyroid hormones work more efficiently in the body when these levels are optimal. You do have to ask for these tests and if your GP is unwilling then Private Testing is available through Thyroid UK - Home Testing Kits can be sent to your home. Please ask if you need more information. Thyroid can be tested too - to include T3 :-) Also test for thyroid Anti-bodies TPo and Tg to rule out Hashimotos. You really do need to have ALL the information in order to move forward.

    If you read posts on this forum you will see that is suggested that once on meds for thyroid - that you are re-tested every 6/8 weeks and the medication adjusted accordingly. 50mcg is a starter dose unless you are very old with a weak heart.

    When it comes to T3 - guessing is not a good idea. It is a potent hormone.

  • Thanks. How do I get a home testing kit? I take a b12 supplement will that not be enough?

  • Depends. How much are you taking ? What was your level when tested ?

    B12 works with Folate in the body so you need a GOOD B Complex too.

    VitD - Ferritin - have they been tested ?

    The main website of this Forum has details of Private Testing ....

    thyroiduk.org

  • My first thought was that you aren't taking enough T4 but without the ranges it's not accurate. Also without a T3 reading it's impossible to say if the problem is down to being undermedicated or bad conversion.

    Moving on to trying T3, sorry it's a waste of time not getting the FT3 result. When you are taking T3 in any form you. We'd to read the results differently. The TSH will be suppressed and the FT4 can, not will, drop to halfway through the range. FT3 should be high in the range but not above it. So taking T3 then the only accurate reading is the FT3 which you didn't have.

    Your question to us itcusual to gave levels raised, well yes it is. The object is to get to the dose that is optimal for you. Nowadays 50 mcg is often thought of as a started dose and after every dose you should have been retested after 6 weeks to see if it's right for you and if not an increase of 25 given then the sequence starting again and so on till he are about right for you. Sometimes you find you are somewhere in between doses, I took 125/100 alternate for many years so there isn't a recommended dose just a dose that is right for you.

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